Monday, 30 September 2013

Tonight is our last night in Puglia. Tomorrow we head for Rome, the airport, and
fly out on Tuesday. That will be the end
of three wonderful months in Italy.
Three months with my husband that form part of an experience we never
expected to have. Three months where we
actually didn't rip each other’s head off, though of course there was a bit of
yelling, usually over the issues of travel planning, or navigation. Fortunately, yelling like that is quickly
forgotten.

I've had friends and family joke about how often we have wanted to
kill each other. And yes, probably the
answer has to be “sometimes” if we’re honest.
But when some people say this to us, they sound puzzled that we could go
almost four months (since we left home) with each other as company, as the only people we talk to, as our social fun, and emotional support. Yet we have.

And we were talking about it tonight, as we were at dinner
tonight. We watched a couple – younger
than us – struggle to make conversation.
And we thought about their lives – probably busy, maybe difficult
financially, almost certainly with children.
And we realised that our relationship is probably the beneficiary of the
“no kidding” factor in our lives. We
don’t have to be parents together, we don’t have to have battles about different
parenting philosophies and styles (and believe me, we would have had a few
battles), we don’t have to crawl in bed exhausted from looking after children,
wrestling with toddlers or teenagers, juggling our annual leave so we can look
after the children in school holidays, and never finding time for ourselves as
a couple.

As a couple without children, we are able to just “be.” It doesn't mean we don’t have
difficulties. Dealing with no income
when we get home will be a struggle, and is sure to put strains on us. Stress and foreign situations can be
difficult too at times, and health issues are always a worry. But we are able to know each other in perhaps
a different way, in perhaps a deeper way than I suspect we would have time to
do so if we were parents. And for that,
for our close relationship now, I am very grateful. (And I think he’s okay with it!)

Saturday, 14 September 2013

Some of us who blog about our No Kidding lives have been
highlighting the New
York Times article by one of our own, Pamela Tsigdinos, and Miriam Zoll. We have been delighted that two people have
been brave enough to speak out and say, “stop!”
Stop claiming that you can solve our infertility. Stop claiming that you have everything we
need to create our families. Stop hiding
the fact that there are women who will not conceive after fertility treatments.

Actually, given that “perception is everything” maybe we did read
two entirely different articles. We come from completely different perspectives. This is
another example of the alienation we sometimes find in the wider infertility blogging community, the differences between those who walked away with a baby (or more), and those of us
who didn't. Those who are raising their
children after fertility treatments or adoption have reason to be grateful to
the fertility/adoption industries. Completely understandably, of course. Those of
us who didn't end up with our babies after fertility treatments (IVF, IUI, clomid,
donor eggs or surrogacy, and any others along the way I might have left out)
probably do feel differently when we see something advertising “Everything You
Need to Create Your Family.” It stings, right to our core, as we
know, KNOW without doubt that they are not providing “everything we need”
because they can't. It might be the “everything”
that some people need, but certainly is not enough for all.

We’re not blaming the industry for that. We don’t expect 100% success rates. I was and still am very comfortable with the care I
received when pursuing fertility treatments. (It was being dropped like a hot potato once it was clear I would have no further treatments that rankles.) But all the advertising, all the media
comments, and the common view pervading society is that fertility treatments
(and/or adoption) “solve” the problem of infertility. They are a cure. An answer. Therefore we don't really have a problem. And we deal with this on a daily basis, in a way those who were lucky
enough to have successful fertility treatments, lucky enough to have partners
who would pursue these treatments, lucky enough to be able to afford them or
have health insurance, lucky enough to conceive/have a surrogate conceive/ or adopt,
don’t have to. We are forever told that
living without children was our “choice.”
When for many of us, as I've written before, there was no choice at all.

If you think I’m exaggerating, look at the Time
cover article about being childfree, dismissing those who faced infertility
by implying that “with fertility treatment widely available, not to mention
adoption” women without children are largely the child-free. That’s right, those of us who are
involuntarily without children don’t exist.

The comparison between a criticism of infertility diagnosis and treatment, and that of cancer diagnosis and treatment, has been made. The difference with infertility when compared with cancer or other serious
diseases (and whilst I haven’t had cancer myself – despite having being
suspected of it when my second complicated ectopic pregnancy wouldn’t resolve –
I have had two parents who have had cancer, one who died of it) is that the
media, society, our friends and family and even those who we thought were our
sisters in infertility, all seem to think that fertility treatments will solve everything. Infertility bloggers (with the exception of a few rare individuals) regularly, still, talk
about those who have resolved their infertility (ie with a baby) and those who
are “still in the trenches.” There are only those two groups. The
implication is always that those in the trenches will crawl out of them, clutching
their newborns in their arms. Failure is not considered to be an option.

Yet, when you get a cancer diagnosis, there is the immediate
fear that it might be a death sentence.
HIV is a similar diagnosis. Statistics
will bear out that you are more likely to survive and live a long life after a
cancer diagnosis (depending on the diagnosis or particular cancer, of course) or thankfully, HIV these days too. But that’s not the first thought you have, or
that anyone has if they hear you have cancer.
You don’t have the world dismissing your problems and telling you that
your outcome is essentially “your choice.” The two
diseases – cancer and infertility - are seen totally differently in the eyes of
our societies, and are treated thus in the media.

So I for one was pleased to see someone putting a more
balanced view on infertility into the media. One article pointing out that fertility treatments don't always work cannot be called skewed, when 99% of articles I've ever seen about infertility focus on
the “happy endings” of pregnancies or adoptions. Even the negative articles focus on the births of multiples (with the Octomom as an extreme example), never the unsuccessful cycles. The article too was not anti-treatment. Far from it. I am pretty confident in saying that none of us who have tried fertility
treatments are against them. We are
thankful for having that opportunity. I
am thankful for friends and family who wouldn’t have children but for fertility
treatments (or adoption). I wish that fertility treatments were more widely available, that in the US insurance covered it, and that restrictions to government funding in many countries weren't so tight. But against this, we find advertising and
media promotion that implies that all you have to do to "create your family" is IVF or another
fertility treatment. And that is simply wrong. And likewise, it would be irresponsible at worst, misleading at best, for any medical
professional to suggest that they had “everything you need” to “cure” a
disease, whether it is infertility, or cancer, or heart disease, or HIV. And yet that is what the Fertility Planit Show is doing. And it is what many
fertility clinics advertise. (I've never
seen a cancer specialist advertise – ever.
It is not done in NZ. I don’t
know if it occurs elsewhere). And as a result, it is
what many people now believe.

There are many hidden issues too. How many women are told that IVF has a much higher rate of ectopic pregnancies? And no-one (well, almost no-one) in the
infertility community talks about the dangers of fertility drugs, and the high
dosages many fertility clinics will give to patients, despite the fact that
statistical evidence doesn't show increases in results over a certain
maximum. Yet many women receive treatments at twice that maximum, or more, and at tremendous financial cost. In my several years of blogging and reading other blogs, I have read only a tiny few blogposts making a passing reference to concern over the effects of the drugs. But is it talked about? Do doctors raise it? I don't know. I know though that I am very thankful that New Zealand’s industry is regulated, and that – even though it meant the end of my journey – I was not able to demand higher and higher dosages of drugs, in case they might work. Because I probably would have, if I could have. Getting off that treadmill isn't easy. It is in many ways easier to stay on it. And so in an unregulated industry
there are dangers, and there can be fly-by-night or unscrupulous
operators who will continue to push treatments that are not justified. And they can argue that they are "doing the best for their patients." But are they really?

I am as you can see very comfortable describing this as an
industry. And yes, it is an industry,
just in the way there is a pharmaceutical industry and a healthcare
industry. These are (with a few exceptions in government-funded systems) businesses
run for profit. I don’t deny that the
majority of practitioners are caring and ethical. And profit is necessary to ensure a service is provided. But they are businesses, first and foremost. I know this is different
in New Zealand, but I have seen dentists advertise, appearance medicine
surgeons advertise, and one or two other medical practitioners advertise. I've never seen a cancer specialist, heart
surgeon, or neurosurgeon advertise. I
have however, even in our heavily regulated fertility industry, had to drive past
a huge billboard advertising our local fertility clinic (when there is only one
in our city) on a daily basis. Because it is a business. (To
add insult to injury, their advertisement included a grammatical error.)

I feel very sad for those who might try different fertility treatments over and over again at the encouragement of a doctor (perhaps well-intentioned, wanting to see
their clients go home with a baby, feeling their pain), and who aren't counselled about the odds,
and whether they should stop. A friend
of a family member, in another country, talks about her million dollar baby who arrived after up
to 20 fertility treatments. Whilst I'm
happy for her, I think of those others who did that many cycles and didn't walk away
with a son. After all, even cancer
specialists will tell a patient when they can’t do anything more. How often, I wonder, (and this is a genuine
question, not a sarcastic comment) does this happen in an unregulated industry? Maybe less than it should?

I also want to acknowledge those who don't appear in anyone’s
statistics of success or failure, simply because they couldn't afford even a
basic fertility treatment, let alone the “2-3 IVF cycles” that might be
necessary to conceive. I have known
plenty of people who can only afford one cycle, in New Zealand, in the UK and
the US, or can’t afford any. Even when
free treatments are available in a government-funded system, there are other
costs – travel to and from clinics, time off work, for example - that prevent women/couples attempting even one fertility treatment cycle. That gets us into a much wider issue, of
course, but I can say I don’t know of anyone in the UK or New Zealand who would
be denied basic cancer treatment or a heart bypass simply because they couldn't
afford it.

Pamela and Miriam are not condemning this industry.
Far from it. But they are saying that
some balance is necessary. They make the
very valid point that fertility treatments don’t work for everyone, and that
bears talking about - in the industry, the support community, bloggers, friends and family. I wonder, does the
fertility industry and the wider infertility community just want those of
us who are childless to go away and be quiet, and pretend it never happened to
us? I fear so. We are after all bad advertising to potential clients of fertility treatments (or adoption), letting them know that treatments (or adoption efforts) aren't always successful. We are the worst nightmares of the women deep in the trenches, and we unwittingly provoke "survivor's guilt" amongst many of the women who have their prized children with them now. We know that. We understand that. We accept that, albeit sadly. But we won't go away. We need to speak out, and be recognised.

As a woman who could not have children after loss,
infertility, and fertility treatments, I personally was very pleased to see my perspective put out there. For a
change. Maybe this publicity will help those of us
who don’t walk away with a baby. Maybe
it will help raise awareness that it happens, and maybe that will reduce the pressure on us and others (to try IVF as
if it is a golden bullet, or to “just adopt”). Maybe too it will help others decide
whether and when and how many treatments are right for them. Maybe, just maybe, speaking out like this will help society begin
to realise that infertility is a real disease, and just like cancer (or heart
disease, or a myriad other conditions) some get a cure, and others have to live
with the consequences for the rest of their lives. And that this isn't “our choice.” But that we still matter.

Oh, and an afterthought. If the Fertility Planit show really does have
“Everything you need to create your
family” I'm assuming they have a well-stocked bank, ready for all those women
who can’t afford treatments, to make withdrawals. Or have directions to a leprechaun with a pot of gold.

Wednesday, 4 September 2013

Throughout the northern hemisphere, people are talking about dealing with the "back to school" issues - whether as parents, having to cope with childcare, expenses, etc, or as non-parents, having to endure the media and personal (eg on FB) blitz about "back to school" which just seems to assume that everyone has kids, or has had them. It's not easy, I know.

This year, I'm lucky. For the first time I'm in the northern hemisphere when it is time to go back to school. Unwittingly, we made plans to shift from northern Italy to southern Italy last weekend. Yes, the weekend when all the Italians head home after their summer holidays, ready for the kids to go back to school, and to start work again on Monday. We braced ourselves for the three day drive down the Adriatic Coast, on the autostradas. It was busy, but not bad. Because, like so often in my life, I was not going on the busy road, but on the road less travelled. Yes, we were heading south, when everyone else was heading north. The multi-lane autostradas north were jam-packed with cars, sometimes at a standstill, as we whizzed past at 130 kmph, with plenty of space, heading south into the sun.

And perhaps because I didn't have to deal with friends and colleagues talking about their kids getting back to school, or perhaps it is simply that most of my friends and family have children who have grown (or who are in the southern hemisphere, in the middle of the winter term), I could feel smug about our particular direction.

Sometimes, going in the opposite direction brings freedom, relaxation, wind in our hair (once we got to our destinations), and no queues at the Autogrills on the highway!

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About Me

This is my blog on living and loving life without children after infertility. Currently I'm a blogger, a self-employed businessperson, and traveller.

I blog on A Separate Life about my everyday life, but this is a space for thoughts on my No Kidding lifestyle, the good and the bad, remembering what was lost, and celebrating what I have.

My husband and I are the stereotypical couple without children who love to travel. I recently started Instagram where I am (at) travellingMali, and I'm posting photos of various trips (so far mainly our northern trip this year), and the occasional photo of where I live in NZ.

In 2013 I travelled in Europe and the Middle East for five months, and kept a blog at Lemons to Limoncello.

I also had a travelblog some years ago, but stopped posting in 2012, which you can see at Mali's Travelalphablog. I'm intending to start that up again, so watch this space!

In the meantime, I love to hear from readers, and you can email me at: malinzblog at yahoo dot co dot nz